BRCA Isn’t Just a Women’s Issue: What Men Need to Know

by Marleah Dean Kruzel, PhD, FSBM

My brother has known for more than a decade that I carry a mutation in the BRCA2 gene.

He knows our mother carries the same mutation. He knows our mother had breast cancer. He knows our family has a history of hereditary cancer.

But so far, he has not undergone genetic testing.

As a researcher who studies how people make medical decisions and communicate about hereditary cancer risk, I find this fascinating. As his sister and a BRCA2 previvor, I understand that undergoing genetic testing and living with hereditary cancer risk are two different things.

My brother’s experience is not unusual.

Research with men who have a family history of hereditary cancer risk has found that many are underinformed and experience uncertainty when making decisions. For example, men have questions about their hereditary cancer risks, their options for managing that risk, including screening and risk-reducing surgery, and what their genetic test results could mean for their families.

Yet, making these decisions can be challenging when publicly available information is scarce, contradictory or does not address men’s specific needs and concerns. Being uncertain can make decisions even harder.

But uncertainty doesn’t just impact individuals. Hereditary cancer syndrome affects families—influencing how relatives understand their own cancer risks, whether they pursue genetic testing or even recommend screening if they test positive for an inherited gene mutation.

I investigate how patients, families and healthcare providers communicate about hereditary cancer risk. One aspect of my research program specifically examines men and hereditary cancer risk.

In my research, I’ve learned there is no single way men respond to hereditary cancer risk. Some seek information, pursue genetic testing, and follow screening recommendations. Others avoid thinking about their risk, believe it’s not related to them or aren’t sure what action to take.

What can men do?

Through my research with men, I’ve discovered three clear ways to help them move from uncertainty toward informed decision-making.

• Learn about your risk.
• Connect with others.
• Advocate for yourself.

1. Know your risk

A key finding from my research is that men are underinformed about their hereditary cancer risks.

I’ve learned that men aren’t necessarily uninterested in their hereditary cancer risk. Many are trying to navigate a healthcare system that hasn’t always provided them with information designed with men in mind.

As such, men in my studies have shared that they seek information from their female relatives, nonprofit organizations, academic websites and healthcare providers. Some also had difficulty knowing which information applies to them.

If you are a man who carries a mutation in a cancer gene, start by learning the basics and talk to your healthcare provider or a certified genetic counselor. Here are some guiding questions:

• What’s my family’s health history?
• What inherited gene mutation has a relative tested positive for?
• If I test positive, which cancers am I at increased risk for?
• If I test positive, what screening is recommended for me and how often should I be screened?
• How might my genetic predisposition impact my family planning?

In addition to speaking with a healthcare provider, find reliable information sources related to men. 

Other helpful organizations include Basser Center for BRCA, Prostate Cancer Foundation, Imerman Angels and HIS Breast Cancer.

2. Connect with your family and your community

A second finding from my research is that men often view hereditary cancer as a family issue, which can be a powerful motivator.

For example, in one of my studies, men who viewed hereditary cancer as a family concern were more likely to engage in proactive healthcare behaviors such as genetic testing and following recommended screening guidelines.

Yet talking about hereditary risk with family members isn’t always easy.

Men say that they feel unprepared to share hereditary cancer risk information with their relatives. As a result, communication about hereditary cancer sometimes falls to female family members, even when those women do not carry the inherited mutation.

If you need to share your positive genetic test results with your family, I recommend three actions:

• Prepare

Have a copy of your genetic test results report, so you can share accurate information.

Think about where and how you want to have the conversation. It might be in person, over the phone, by email or text or even via social media. Match the communication channel to your relationship.

Think through and practice what you want to say.

• Anticipate

Before sharing, try to anticipate how your family member might respond.

They may be relieved to have the information. They may be confused or unsure. They may not seem interested, and they may even react negatively.

Keep in mind that their initial reaction doesn’t necessarily predict how they will feel later. It takes time to process hereditary cancer risk information.

• Follow up

Set the expectation that you are available to talk more and that you plan to follow up after the family member has had time to process the information. If they initially respond with anger or seem uninterested, that doesn’t necessarily mean they will always feel that way.

You are not your family’s certified genetic counselor. Your role is to share accurate information and help your relatives find the resources they need.

Remember that you don't have to navigate hereditary cancer alone, either.

Genetic counselors and FORCE provide family sharing letters and other resources to help simplify the process. ICARE also has additional resources for preparing, anticipating and following up with family members.

3. Advocate for yourself

The last finding from my research and perhaps the most important is to be an active participant in your healthcare.

Men often seek information about hereditary cancer risk from their primary care physicians, but sometimes, those providers have limited training on genetics.

One of my studies showed that men’s expectations of clinical appointments shaped their understanding of their hereditary cancer risks and the decisions they ultimately made.

That means you may need to advocate for yourself.

First, find a healthcare provider who is knowledgeable about hereditary cancer risk.

Second, gather reputable resources with your healthcare team. FORCE’s Checklist Wizard can help you prepare questions to ask your healthcare provider. 

Third, before your clinical appointment, write down your concerns and questions:

• Tell your healthcare provider about your family history and inherited gene mutation. 
• Ask whether you should see a genetic counselor or another specialist.
• Ask what screening is recommended for you.

Self-advocacy doesn’t mean you need to know everything. It means asking questions, seeking accurate information and making sure you are a key player on your healthcare team.

You don’t have to do everything at once. Just take the next step.

Someday, my brother is going to call me and say he’s ready to undergo genetic testing. I’ll be ready to make sure he finds a certified genetic counselor and share resources specific to him.

A new resource for men

If you’re interested in hearing more about men’s experiences with hereditary cancer risk, check out my research team’s educational booklet.

The booklet shares men’s stories and practical advice to help readers better understand hereditary cancer risks, navigate the uncertainty that comes with that risk and feel more prepared to talk with family members and healthcare providers.

Additional resources for men

FORCE Men’s Support Group: Connect on Zoom with other men navigating hereditary cancer in a safe, supportive, judgment-free setting. Meetings offer peer-led discussion, opportunities to share experiences and access to helpful information and resources.

Men’s Stories about Hereditary Cancer: Stories based on research with men to help better understand hereditary cancer risk, navigate uncertainty and communicate effectively with others.

Men and BRCA at the Basser Center for BRCA: Information and resources focused on BRCA-related cancer risk.

HIS Breast Cancer: Resources and support focused on men affected by breast cancer.

Prostate Cancer Foundation: Information about prostate cancer, including hereditary risk.

Imerman Angels: Peer-to-peer cancer support.

My Faulty Gene: Education and support for people with inherited cancer-risk mutations and help to cover the cost of genetic testing for some individuals whose insurance does not.

Previvor Perspectives: A project co-founded by Sara Kavanaugh and me aims to connect patients, researchers and healthcare providers while helping people live with hereditary cancer risk.

National Society of Genetic Counselors: A searchable directory to help people locate genetic counselors who can assess family history, discuss risk and determine whether genetic testing may be appropriate.

Marleah Dean Kruzel, PhD, FSBM, is a professor, researcher and speaker specializing in healthcare communication. A BRCA2 previvor and daughter of a 29-year breast cancer survivor, her research focuses on uncertainty, medical decision-making, and communication of genetic risk information. She is an expert on the health experiences and decisions of previvors, individuals with inherited gene mutations who have not been diagnosed with cancer. Her research has been published in leading journals and funded by the NCI, ACS, CDC and PCORI. Marleah is committed to patient engagement and translating research into practice. She serves as a CDC Bring Your Brave spokesperson and Scientific Advisory Board member for FORCE and My Faulty Gene.

References

Dean, M., Boumis, J. K., Zhong, L., Ingle, A., et al. (2025). Assessing the acceptability and appropriateness of a psychoeducational graphic novel about inherited cancer risk designed for men. Journal of Genetic Counseling, 34(2), e1954.

Dean, M., Campbell-Salome, G., & Rauscher, E. A. (2020). Engaging men with BRCA-related cancer risks: Practical advice for BRCA risk management from male stakeholders. American Journal of Men’s Health, 14(3), 1-10. 

Dean, M., Rauscher, E. A., Gomez, E., Fisher, C. (2019). Expectations versus reality: The impact of men’s expectancy violations in conversations with healthcare providers about BRCA-related cancer risks. Patient Education & Counseling, 102(9),1650-1655.

Rauscher, E. A., Dean, M., Campbell-Salome, G., & Barbour, J. (2019). “How do we rally around the one who was positive": Familial uncertainty management in the context of men managing BRCA-related cancer risks. Social Science & Medicine, 242, 112592.

Rauscher, E. A., Dean, M., Campbell-Salome, G. (2018). “I am uncertain about what my uncertainty even is”: Men’s uncertainty and information management of their BRCA-related cancer risks. Journal of Genetic Counseling, 27(6), 1417-1427.

Rauscher, E. A. & Dean, M. (2018). “I've just never gotten around to doing it”: Men's Approaches to Managing BRCA-related Cancer Risks. Patient Education & Counseling, 101(2), 340-345.

Dean, M. & Rauscher, E. A. (2018). Men’s and women’s approaches to disclosure about BRCA-related cancer risk and family planning decision-making. Qualitative Health Research, 28(14).